Saturday, 30 June 2012

Case discussion on Twitter: how can we make best practice explicit?

It's great to see the growth of discussion in medical education on Twitter. Recently I have seen a few really interesting cases being discussed (and a lot being learned), but there have also been some questions about how we together can think about what is best practice in leading these discussions.

Case discussions have always been a very important way of learning in medicine. And as one doctor said, junior staff are still encouraged to submit cases to journals, but it can take many months for a case submitted to a journal to reach publication. In the meantime, social media removes those barriers to publication. We can all self-publish. But we have to be responsible too. I think that all of the people currently involved in leading discussions are being responsible, but how do we make clear to others what best practices we are following? I think that it is important to consider this for a few reasons. First, we have an obligation to all patients to make these discussions safe. Second, we are modelling how to share these cases to other students and professionals.

We also need to think about whether the existing guidance, which in the UK is from the GMC, is sufficient to guide us.

So a few questions....

What should we tell patients about sharing their story? Do we need their consent if the story is not recognisable to others?When the GMC discuss confidentiality the emphasis is on not sharing information (without consent) that would allow another to recognise a patient or someone close to them. In the new draft guidance on social media the only additional emphasis is on the impact of embedded information such as GPS co-ordinates that would allow us to know from where a tweet was made, or an image taken.

My own practice is that if I want to share a story about a patient that might allow them to recognise themselves then I ask permission, and I record that when sharing the story. So far this has only happened once and it was in a blog post. How could it be conveyed that a patient was aware and happy that their story was being shared on Twitter? If this is done in a separate tweet then those following the tweets may miss it and wonder if permission has been given. Is this something we need to be concerned about?

What about sharing images routinely made as part of care?

In 2011 the GMC gave additional guidance on the audio-visual recordings. For some images made as part of routine care, such as pathology slides, internal images of organs, and xrays, then no specific consent to take the images is needed. It is presumed that if the patient gives consent to the procedure then they give consent to the image being recorded. The guidances says that attempts should be made to make patients aware that they may be shared in an anonymised form, but there is no need to ask permission before doing this. This includes for publication in widely-accessible media such as press, print and internet. We can presume this includes Twitter!

The draft social media guidance makes no additional comment on this so sharing an anonymised image on Twitter for teaching purposes seems acceptable. But images are rarely of much value without an accompanying story. So we are back to the situation above. How much permission is it good practice to obtain before sharing a story? And we have to remember that the real-time nature of social media means that a story about a patient might be shared as it is happening, rather than six months later, so that it is more likely that people may recognise themselves or others.

Other images that are made as part of routine care, but are not part of a procedure, such as an image of the outside of the body, do need specific consent to be given. And again patients should be made aware that these images may be used for teaching or research, but specific consent does not have to be given for them to be shared for this purpose as long as they are anonymised and all identifying details are removed. However, the guidance states that if the image is to be shared in widely accessible media (eg Twitter or a blog) then if the image is identifiable consent must be obtained. If the image has been anonymised then good practice is that consent should also be obtained but," if it is not practicable to do so, you may publish the recording, bearing in mind that it may be difficult to ensure that all features of a recording that could identify the patient to any member of the public have been removed."

What about recording an image to share in an educational discussion on social media?

The GMC guidance which applies here is the section on "recordings for use in widely accessible public media". Here, even if the patient is not identifiable, and has been anonymised, consent must be given explicitly. Paragraph 37 states:"You must get the patient's consent, which should usually be in writing, to make a recording that will be used in widely accessible public media, whether or not you consider the patient will be identifiable from the recording"
We are also obliged to check with our employers what their policies are. Some trusts prohibit the use of mobile phone cameras by staff to protect patient confidentiality.

If consent has been obtained from patients to share their non-identifiable images online, how can we share that information in a tweet? Can we presume that if we see an image shared on Twitter then the person sharing it has followed the correct policies, just as when we see an image in a journal we might presume that the correct policies have been followed? Should those leading case discussions develop their own policies and make these accessible from their Twitter profile?

Medical education on Twitter is fantastic. There are no professional or geopgraphic boundaries to discussions. And no boundaries to patients participating either! I want to see all that is happening already continue and also for more people to get involved. I think that by considering these issues and showing how we can be safe and transparent we can take these discussions to a new level of participation.

32 comments:

I'm glad you wrote this post, because watching one of the streams on Twitter had made me think about some of these questions.

First of all, I think having these discussions in a public forum is excellent; open practice can help clear up a lot of mis-understandings between those in various professions and those outside, but obviously sensitive information needs to be carefully treated. GMC guidelines and the Data Protection Act help remind people of this, but more importantly, it is just plain and simple common decency to make sure you aren't discussing someone else's personal details.

The possibility of someone missing context applies to missing some parts of the conversation on Twitter, not just missing whether permission has been sought and given. I wouldn't worry too much about this one - it could, potentially, have an impact on reputation, but in general I think the profession is well enough respected that normally it is assumed that consent has been given. As long as you can demonstrate clearly that it has been if challenged, that should be OK.

Of course, if the patient changes their mind, having had the conversation on a public forum makes things trickier. And for that reason, I think I would always argue on the side of caution.

The tweets which caught my attention earlier did not identify the individual, but if I knew they doctor and was involved in their community, I am pretty sure that, if this was a live 'case', or a recent one, I would be able to identify the patient. Perhaps a little too much detail was given? On the other hand, if this was brought up by one practitioner on behalf of another, it would be very hard to identify the patient. As you suggest, there is more to being able to identify someone than just 'hard' details - the context includes your location, description of the circumstances, whether your account is anonymous (unknown by your community), the timing of the discussion in relation to the event...

And yet, quickly cross-checking with other people's opinions via tools such as Twitter could improve clinical outcomes (multiple second opinions, if you can tweet sufficient facts and enough people are responsive). If it isn't a real-time issue, perhaps leaving the debate until a (randomised) time later might be best, just to minimise the risk of connections being made?

Thanks Pat. Your point that the profession is trusted so doesn't need to be so explicit publicly is a good one. It's interesting that often the questions about consent here are being asked by other doctors rather than the public! For me a big part of this is about showing those with less experience what is a good way of doing things. It's about teaching. If we presume that everyone knows what the rules are and that we are following them, then it can be harder for someone more junior to know what those rules actually are!

I've started talking here about the use of twitter for education. I think there would be a different set of issues if thinking about using social media to discuss a problem and get help making clinical decisions. That would certainly deserve its own blog post.

I am glad you started the ball rolling. Here are some quick general comments.This is going to be a moving target. I can see explicit patient consent for SoMe regulations, SoMe IRBs etc in the future. We will probably have content specific for SoMe in human research subject protection training.

Some considerations for best practices - 1. The tone of the tweet/post - what impression will it create about the patient (intentional or not) in the readers' minds. 2. If you were the patient and this was tweeted about you, what would be your reaction? Even if it was anonymous and only you could identify yourself? 3. Comments generated by the tweet/post - in a post you can remove/moderate then but you cannot control much on Twitter.4. The author should think about the point s/he is trying to make. Where appropriate, use a minimal necessary standard - fudge/add other details so it really becomes a hypothetical case while preserving the essential message. Should clearly then not call this a real case but use appropriate disclaimers to explain that the facts were changed to preserve the message but protect the pt.5. Consider the public health impact - e.g. a blog/tweet about the first case of a dangerous communicable infection seen in a geographic area...﻿

The informed consent for social media is tricky. Since many patients probably don't intuitively understand the various aspects of Social Media and they may feel a bit vulnerable declining consent when asked by their health care provider, it may not really be a true willing informed consent. That I why I mention that we may end up with special regulations for informed consent for this and even oversight bodies like Institutional review boards. Pending that, we need some standards which set the bar pretty high.

This is a very interesting debate that you have opened up ... In my experience in facilitating twitter discussions via #NurChat I have found that we do not discuss specific patients - nurses participating seem to grasp the nature of social media in that it is very public and remain cautious. What tends to happen in #NurChat debates is that nursing will be discussed in generic forms without mention of specific cases or healthcare settings ... This still proves to be worthwhile debate but sits nicely within the boundaries of public discussion. However I do think that more consideration needs to be given to debating specifics within social media because there can be so many benefits to an open debate and as this way of developing professionally grows we need to have the mechanisms in place (and known) in order to have more complex discussions.

I have the idea that twitter its maybe nice to show and image or study but not to discuss clinical cases. In that setting we have been using Google Plus and the feature of circles or a group (Close or even open but specific to that issue) in Facebook. I agree with your points and previous commentary.

How often is their value in sharing a clinical image without the accompanying story? And in the UK, if the image has been made for the purposes of sharing on social media then explicit consent should be gained for this. I think that we would have to presume that even though Facebook and Google + can be 'closed' they are widely accessible media.

Have you ever had patients participate in discussions about their cases in social media? I think that could be a really rich learning experience for all involved!

New England Journal of Medicine uses photos with a very short history and they are very popular in Facebook. http://www.facebook.com/TheNewEnglandJournalofMedicine/photos so an image could be enough in some settings. I really have not considered to discuss clinical cases in an open way with patients in social media more than some advice. Use to only with other colleagues and my students. I think we have to be cautious about it and feel comfortable.

I'm keenly watching this debate on Twitter and am grateful for a reminder of the rules. I want to start a haematological education account but keep thinking of the problems. I see a simple idea of sharing a blood film - utterly anonymous. But then I need the story next to it. If I say this is the blood film of a three year old girl presenting with petechiae etc. then it is very very easy for someone who knows my name, my hospital or my region to identify the story. The story has to be close to the truth to be educational but sufficiently different to be anonymous. I can't say it's a 47year old business man to start the same discussion. Using opposites is too obvious so I am left puzzling over what to do. My feeling is to use the oldest blood films I can find and entirely make up a story. I bet someone ends up thinking its about them though

Chris this is a wonderful example which gets at the point I was trying to make much more clearly than I managed I think!

There are (at least) two solutions. 1. Ask the family of the three year old for permission to share the story. Even tell them when it is happening and get them to join in. In some ways that seems less risky, but it would still take a very careful discussion to make sure that consent was 'informed'.

2. Make the story up. This is going to be less rich because made-up stories are less likely to be as complex and bring up the same learning points as real ones. But it would still be useful I'd think.

And then I think that you would need some kind of statement making clear that anything you discussed was either with consent, or was made up.

Excellent advice. Will do your second point along with the disclaimer when I get this going. I reckon there would be problems only in malignant diagnoses involving some patients and also think its appropriate to get your Trusts permission. That would be best practice. Thanks again

The following is case reads in rather a strange way but it is to give whole background in short as possible time:

11 week old infant feels warm to her mother who has noted decreased feeding and increased sleep duration during the day. Takes temperature and 38.1 goes to GP who records a temp 38.9 and although not noting signs of serious concern refers to Paediatricians.Paediatric SpR reviews and notes febrile, quiet child, not quite right in their or mums eyes and performs full septic screen (CRP 11, WCC 11.4) and commences broad spectrum antibiotics. Consultant reviews and knowing father, who is in medical profession, fails to introduce themselves (while mother in room), doesn't wash hands and makes clear point of discovering occipital node (when SpR had not noted this) in front of parents.

Lets just say someone (lets call them John Smith a Paediatric SHO) decides to tweet about this. The following could be tweeted

@John_Smith: 11 week old presents with fever of 38.9 of uncertain source - what is the best antibiotic cover?

@John_Smith: 11 week old with confirmed fever over 38.5 has no abnormal findings apart from an occipital node. Does this increase the chance of the cause being viral?

@John_Smith 11 week old with fever presented with CRP 11 and WCC 11.4. Would you proceed to full septic screen?

@John_Smith: 11 week old daughter of a doctor presents with a fever of uncertain source - are you more likely to do a full septic screen?

@John_Smith: 11 week old presented today with fever and consultant didn't introduce himself or wash his hands. Should I have said something?

John_Smith uses the following profile "Trainee Paediatrician. Lives in beautiful Newton. Loves reading and tweeting." He also contributes to a twitter feed called @MeduuEduu which presents cases for discussion and tweets

@MeduuEduu Case 23: 11 week old with confirmed fever over 38.5 has no abnormal findings apart from an occipital node. Does this increase the chance of the cause being viral?

Questions from thisi) which if any or all of the tweets breech confidentialityii) is @MeduuEduu safer than @John_Smiths tweet because no locality is mentioned at all

Are the following of similar education value?

@John_Smith: 8 week old presents with fever of 38.7 of uncertain source - what is the best antibiotic cover?[clinical knowledge test no different from original case]

@John_Smith: 10 week old with confirmed fever over 38.5 has no abnormal findings apart from a femoral node. Does this increase the chance of the cause being viral?[Clinical conundrum probably no different from original but specific clinical feature hidden]

@John_Smith 9 week old with fever presented with CRP 12 and WCC 11.7. Would you proceed to full septic screen?[unlikely parents would know actual results but hides this possibility without changing ethos of question]

@John_Smith: 9 week old boy whose mother is a paediatrician presents with a fever of uncertain source - are you more likely to do a full septic screen?[Similar dilemma, and potentially plausible situation, which would not reveal original case]

@John_Smith: 5 year old came in with a seizure and the consultant didn't wash their hands before examining him. Should I have said something?[Again dilemma maintained as well as confidentiality]

I am sure there are some very specific cases that can't always be altered but I throw this out there to create debate...

I guess this gets to the heart of why we share cases. Surely the closer it is to the real life situation (or interpretations of it) the the more the learning. Where do you stand on patient consent? Would it be very awkward to say to that parent that you would like to discuss this case on twitter as you thought it produced useful learning points? Is it unfair to burden patients in this way? How likely are they to be interested in joining in the conversation? Is it us doctors who feel uncomfortable in disclosing our uncertainty?

I really like the idea of involving patients; there does need to be a good discussion with the parties involved but I think that more often than not people are more willing to participate in educational initiatives than the governance police might think and we should credit them with the good sense most people have. If you are familiar with HealthTalk online, this kind of additional material would be an excellent addition.

I really like the idea of involving patients too. I am sure that it will be the way forward. Who do you think the 'governance police' are and why do you think that they consider that people are not willing to participate in educational initiatives?

You don't need patient permission to write them up in an article, although you do to share photographs of them. However I consider social media far diffent than the Lancet! I generally will be very non-specific when discussing medical stuff online - and if specific cases are mentioned they are usually common enough that I'm talking generalities.

I do case-based teaching sessions on twitter, and the cases are basically fabricated on the spot but may be inspired by recent or past memorable cases. My twitter feed is public, I am easily identifiable, and I've been a patient myself so the last thing I want is for someone to be embarrassed or offended by what I've said about them! So I don't say it...

You don't need patient permission to write them up in an article? Are you sure? The Lancet states: " Ifthere is an unavoidable risk of breach of privacy—eg, in a clinicalphotograph or in case details—the patient’s written consent to publication, orthat ofthe next of kin, must be obtained• To respect your patient’s privacy, please do not send theconsentformto us. Instead,we require you to send a statementsigned by yourself confirming that you have obtained consentfrom the patient using The Lancet patient consent form"

And here is the patient consent http://download.thelancet.com/flatcontentassets/authors/lancet-consent-form.pdf

I think that the #micro140 cases are super. (Are they being archived?) But I'm wondering if a statement from you about the steps you take to protect patients might not be a useful addition. You could link to it at the start of discussions or from your Twitter profile. Just a thought:)

As a patient I am more than happy to give permission for my case to be discussed in social media but would be a bit uneasy if I recognised myself explicitly - especially with a picture - because I would nt rant details of my condition being known to all without my knowledge - thinking of mental health issues and employers reading about them etc

Thanks Julie. I haven't seen any case discussions in mental health/psychiatry yet. I can understand that thinking mental health is being discussed without your consent would be much more distressing than seeing a picture of your ingrown toenail taken and shared without your permission. Good distinction:)

Its hard to generalise about social media- in a way twitter is like a discussion over coffee in hospital cafe- lively but very public and crucially hard for people to make mistakes or admit ignorance without loading face. Google groups may be more like a discussion in a seminar room- more private but can lack energy and not everyone shows up. So as well as confidentiality we need to pay attention to the dynamics between learners.

Your point about the fact that some people feel uncomfortable making mistakes and admitting ignorance on Twitter is a good one. I make mistakes and I admit it. I don't think I lose face. In fact I think in this day and age being seen to admit to mistakes adds to credibility. How can we get this message spread more widely?

Do you think that if people were more comfortable in this then there would be greater participation in case discussions?

Anne Marie, Re: Spreading the message...I think that the healthcare professionals who are already using Twitter & Social Media are blazing a trail and the message will spread itself. Seeing comments about everything from clinical observations to venting about a rough day to enthusiasm about their hobbies and interests - really humanises people and I have no doubt it makes newbies to Twitter feel more comfortable about sharing their own successes and mistakes - especially when the mistakes are clearly being used as lessons for the future. And anyone who is reluctant can always use an avatar and a non-identifiable bio!

Re: how to convey that consent has been obtained, perhaps a simple hashtag or acronym like CG+ (Consent Given) could be used with each tweet and that would be similar to the Lancet asking an author to declare that consent was obtained. Owner of Twitter account/person tweeting would then be accountable?

CG+ <- I like it! We still need to figure out what the nature of the consent should be though. I didn't even broach that here, but Mark Ryan makes a good start on some of the questions over here http://smhcop.wordpress.com/2012/07/03/what-are-the-ethics-of-crowdsourcing-a-diagnosis/ - although his account is about consent for sharing which will be beneficial directly to the patient- one hopes. Although, hopefully participating in education should also be beneficial to patients too.

Hi, I read your blogpost with interest and I am curious to know your opinion on case discussion on other platforms like e.g. Google+ Circles discussion or other types of semi-closed (not public) case discussion, what are your considerations on that? G+style (more alike forummembers discussing in threads visible (members-only) as a whole instead of loose parts like tweets). So Google+ has other characteristics then Twitter. Because like Facebook or a forum discussions are so to say nested (i.e. all comments are presented together in one thread) the disadvantage of loose parts like loose tweets can be taken away, especially when in the openingspost of a thread the topicstarter adds comments on patient' s consent and regarding the professional responsibility of any colleague doctor involved in the discussion. Also by using Circles comments are only shared with a Circle of people you now and not visible to the outside world, so they are semi-private nd not public and visable by anyone browsing by. So in Google+ one can better take care of which audience can and which audinece can not view and/or take part of case discussions. (a VERY important additional remark on this specifically for Google+ Circles is that the topic starter should ALWAYS choose to lock the message before posting. Locking a message prevents the messages to be (accidentally) re-shared by Circle-members outside of that specific Circle. Locking a message is not the same as closing it for comments, these are seperate settings for each Google+ posting and can be chosen (also afterwards when already posted) by clicking the circle with an arrow in it at the top tight corner of the posting). In Twitter there are only two modes: public or closed/locked, but in the latter case one should be VERY aware of ones followers on Twitter that gave acces to ones locked tweets. Most people have a lot of followers that are not professional colleagues but frineds, or enthusiasiasts sharing hobbies or whatever). Also on twitter seperate tweets can be retweeted and, as you correctly state, the erst of the story pieces are not necessarily retweeted in combination with one piece. Personally I do not feel that I need to have patients consents in ANY case I discuss online as long as it is fully anonymised, and as long as I feel I can take the professional responsibility (primum non nocere) for the group of people I exclusively (!) choose to share a case with, with the main purpose of finding a solution for that case (in the interest of my patient being discussed) and a secondary aim to become better doctors by learning from each other from anonymised cases of daily clinical practice. Ethically it may even be favourable for doctors to crowdsource rather then to be too much of a solo-player and dive into textbooks to solve things on ones own. The crucial consideration for me is too maximally rule out that any of the group members I discuss a case with could end up (via-via) harming my patient. Chances that the latter happens are fairly reduced when I discuss cases online woth colleagues from all over the world and actually so far without a single colleague from my own country discussing along. But one should always (again) be aware and cautious, that is your professional task.

To conclude: looking forward on how you regard the use of e.g. Google+ (closed) Circles for case discussions. For me it is obvious Twitter is not the platform that most ideally suits that purpose for reasons you summarise very nciely in the above blogpost.

Thanks Michiel,I don't think that a public conversation is a risk, but I think not involving a patient in a conversation about their care is. Just as we believe in giving patients access to their records I believe that they should be able to participate or have access to discussions which are about them.I don't believe that there is much benefit from discussing anonymised cases. If you do then I suspect it is because we disagree on the meaning of anonymised.The benefit of social media is that it allows multiple voices to participate. This can lead to messy conversation but I believe that ultimately more will be learnt. Hiving of conversations to what fees like a closed spaces might make for an easier conversation and that may be legitimate. But we should be explicit about why we are doing this. If we are going to excluded patients from learning from these conversations we need to have a very good explanation.Thanks again,Anne Marie

funny to notice how we approach the same phenomenon from quite dfferent "flying routes" (dutch metaphor for judging a situation from different points of view/perspectives). Had to re-read and re-think a bit to find words for a reply ;-)

It could be that the crux is in the perhaps grey -and not so strictly bordered- area between shared decision making versus learning/education.The first is about persons (the same situation could end up in different made shared decision on which way to go in patients with different characteristics or different own views or preferences) whilst the latter is un-personalised and about cases (of course behind each case from real life an unique person is hidden, but learning from a case is reduced to a technical discussion putting facts together rather then involving the dinividual patient characteristics in a decision).

I personally regard myself a very "2.0" doctor in putting effort in playing a role as a professional advicer for the patient in my outpatient clinic and make shared decision with a particular patient. Just pressing patients into one or another corner, telling them waht to do and prescribing stuff without some level of agreement and informed conent with the person that is going to take that medication is not my way of being a doctor. With regard to patient empowerment and shared decision making I think we have two minds one thought so to say.

But as learning from each other and medical education concerns (the actual topic of this blogpost, I did notice you mention in a reply to one of the earlier comments above that you considered writing a separate blogpost on shared decision making and social media, so I assume you see some differences here as well, although in general this is a somewhat overlapping issue) I like to teach patients, like to teach students, and like to be teached by them myself as well. But, having said that, although in a modern health 2.0 era patients and doctors are considered equivalent they are of course not identical in knowledge, vocabulary used etcetc... ==end of part one===

===start of part two===Like my colleague Carlo V Caballero-Uribe in a comment above I have actually never considered involving patients in the technical part of the discussion (so it is a good thing you raise this question!), sometimes indeed a conversation may be easier with people with the same educational background and jargon. That is not to say that transparency isn' t important.

For now I prefer the patient' s personal doctor to report to the patient what was the result of crowdsourcing his online colleagues and then -giving this additional information- decide together with that patient which way to go (shared decision making), but if a patient would specifically ask me of course I would provide him or her access to that conversation, there is nothing secret or whatsoever. However I would not take the initiative. Although a patient wants to be his/her own co-pilot (co-doctor) why should every patient join converstions between doctors apart from what is relevant for his/her own health? I do not assume every patient wants or thinks to become a doctor and know everything about his/her own health and also other ones health without a medical education. And if a patient would want that she or he is smart enough to know she/he should start a medical education as a basis first and then build from there.

Although equivalence is important doctors should so to say (I am sorry I can not find the proper words but from a doctor's pont of view you can also take patient empowerment and emancipation too far) not have to apologise being different then patients in having had a longterm medical education and training and wanting to discuss cases (not persons!) in their own circles just too (technically) learn from within their own professional circles next to what they learn by practising their job in everydays contact with and from patients.

Also of importance in discriminating between learning and (shared) decision making is that a case discussion does NOT result in a decision being made, it only results in building a (differential) diagnosis and gaining other ones experiences in how certain treatments turned out succesfull or not. A decision on the other hand, I fully agree with you, should always be made together and with informed consent of the individual and unique patient involved.

So, whilst equivalent in my opinion it is allright to acknowledge their is a difference between doctors and patients, and doctors wanting to (technically) discuss cases (not persons) with each other, in my opinion nothing wrong with that.

Quote: "I don't believe that there is much benefit from discussing anonymised cases. If you do then I suspect it is because we disagree on the meaning of anonymised."

That is also where I came from in terms of anonymising (for the technical discussion -that is NOT for the decision making part- between doctor' s from a doctor' s point of view it is vice versa: there is no benefit of knowing the name of the patient or knowing the patient.

I guess you came from the patient (learning) point of view on anonymising, otherwise I o not really understand what you meant with the above quote on anonymised case discussion.

I will leave it with this, however looking forward to your response on this part of the discussion,